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[Talli]

Thank you all.

I think the call took me so much by surprise I just questioned it in my mind.

I have several issues that I would like to discuss with them so having had a moment to reflect, I’m really happy this appointment has come through now.

I think you can sometimes just get a place where you unknowingly accept some symptoms as your new normal…. When they might not have to be.

I’ve made a list of my top six major symptoms and I’ll see if they recommend a new approach to any of them.

Thanks again.

Hi just wondering if you’ve had your appointment and how it went?

I’ve got one booked for next week (after a two year wait…like you Id forgotton about the referral lol) and I’m terrified they’ll tell me to stop using Vagifem internally x4 a week and Ovestin x3 a week externally.
I can barely function on that but using it any less would be horrific!
I also have LS,

Hi Talli,

I have mixed feelings about my appointment....

The Dr raised an eyebrow when I said I was using vaginal estrogen three times a week as opposed to the recommended two but did not tell me to stop or mention it in his letter to my GP.

He recommended that I use a vaginal moisturiser more regularly. He recommended Yes but I have tried this previously and not found it to help.

He said he would see me again in six months!

So I came away a little disheartened, however, I have stuck with the estrogen three times a week and introduced Dr Wolffs V-San moisturiser and I am already feeling an improvement in dryness but not so much the bladder leaks.

He also talked about testosterone but said we could discuss further next time if my symptoms have not improved which I thought was a little odd given I thought this was only given for low libido which we didn't discuss.  However I am interested in trying it to see if it helps my severe dry eye syndrome..

So he's happy to prescribe testosterone 'off label' but raised an eyebrow about using Estrgoen?!?

So all in all, the appointment was ok, I guess the problem is if you see someone who is 'against' your current regime where does that leave you? Yes, you can ignore them but the Dr I saw sent a letter to my GP covering everything we discussed so could that possible become an issue for you?!

I would also print out the GSM Guidelines as MrsMitch recommends. I had them ready in my handbag 

Sorry I can't be more helpful and wishing you luck!

Thank you so much!

I’m hoping she dosnt interfere with my x4 a week Vagifem (prescribed by gp) and x3 a week Ovestin (also prescribed by gp) although they’re not sorting the issue I’d be a total and complete mess without them!

I’m not on systemic yet as only 41 (42 in a month lol) and still having periods although they’re lighter than they were but still pretty regular so I’m just worried she might say I don’t need as much local :/

Anyway my app is on Tuesday so I’ll pop back once I’ve had it and update…probably in floods of tears and desperately booking a gp app to try and get my hrt back! 😂😂

[joziel]

I also had VA to begin with and on lower doses of systemic estrogen. I was using Vagifem every day, estriol cream on the outside and YES as well and it was a huge palaver every morning and evening and sometimes in between.

Now I am on decent doses of systemic estrogen (far more than the NHS would ever prescribe via the Newson Clinic) and I don't need to use any local estrogen at all.

My systemic estrogen is probably around 650pmol now, and it takes a lot to get me to that because I don't absorb that well. I'm on 3x Estradot 100mcg patches PLUS 3 pumps of gel. That is nearly 4x the max licensed dose. The level it gets me to, is the same some women would get on 100mcg. It makes zero sense for everyone to be talking about doses. It should be about targeted levels, but no one in the NHS will do that. Sorry but, if you want to get well, you have to go private. It's the same with thyroid as well which unfortunately I also have to go private for and it costs a fortune. At least I get the HRT on the NHS because my GP listens to my Newson consultant's letter and prescriptions.

It is incredible that you have waited 3 years for a menopause clinic referral only to be told to use more YES and come back in 6 months....

[Talli]

So I’ve had my appointment this morning with the menopause clinic. It felt very rushed and I didn’t really get a chance to say much. She’s going to see me in 6 months for a face to face. She said I could use the Vagifem x 4 a week and the ovestin x3 then x4 times a week so everyday that I’m not using Vagifem I use the ovestin.
Not sure it was terribly helpful as she said I shouldn’t be getting dryness because I’m still having periods and that it’s all down to my lichen sclerosis which I don’t think it is.
Anyway…mixed feelings about it tbh 🥴

[joziel]

I've no idea what having dryness has to do with still having periods. That's like saying you don't need to take HRT until your periods stop. Which is crap.

Honestly, where do these doctors get their training and how can they call themselves medically qualified? They are supposed to be specialists...

[Talli]

I know. I just cried after coming off the phone with her.
She didn’t let me speak and kept talking over me
She has said I can carry on with Vagifem x4 and Ovestin x3 a week but honestly sometimes I use it more than that and I’m terrified she’ll write to my gp now and they’ll cut my prescription down to only being enough for x3 a week
I just feel so upset by it.
Sorry to moan

[Clovie]

I know. I just cried after coming off the phone with her.
She didn’t let me speak and kept talking over me
She has said I can carry on with Vagifem x4 and Ovestin x3 a week but honestly sometimes I use it more than that and I’m terrified she’ll write to my gp now and they’ll cut my prescription down to only being enough for x3 a week
I just feel so upset by it.
Sorry to moan

You are not moaning Talli, and this forum is exactly for asking and discussing this stuff. The ladies in here have been a lifeline to me in my anxiety related to my own problem.

The way you were treated is just awful. Talking over you!?!    I am sick to death of being treated the way you were treated.
You have a right to respect and to have a say in your own treatment.
Would you consider asking for a second opinion kind of thing to speak to someone else? Or I would send in a letter to complain. I am in the process of doing exactly that myself. The more people stand up for themselves the less these people get to treat us as just lumps of flesh    ( and yes I appreciate there are LOVELY LOVELY doctors, nurses, specialists out there as well   Everyone should be treated kindly, no-=one knows who is particularly anxious about this stuff and how it can send us (well, me for one) into a downward spiral.

Please be kind to yourself and then consider what your next steps are , sending much support xx

[Talli]

Thank you so so much for your reply.
This kind of stuff has me spiralling downwards.
I have PTSD and am Autistic too which makes me forget things and I just can’t communicate properly if I’m rushed and I forgot to say so much and then when the call was over I just dissolved into tears terrified that she’ll write and tell the gp to give me less because to quote her “you’re only young (42) and your ovaries are still producing oestrogen so you shouldn’t really need any”
I have bladder problems and fibromyalgia and POTS and LS and other health issues too and I just feel defeated by it.
I said to my husband that I think I’ll just resolve myself to the fact that I’ll be uncomfortable  for the rest of my life and just stop bothering to get treatment cause  it just dosnt work and you just end up getting pooh poohed like you’re making it all up.
Anyway I think I’ll cancel the next app with her and just give up (on treatment lol not life itself although I have been there before too)
Thank you again for your kind words. It make such a difference knowing some people believe me and don’t think I’m overreacting.

[Clovie]

Thank you so so much for your reply.
This kind of stuff has me spiralling downwards.
I have PTSD and am Autistic too which makes me forget things and I just can’t communicate properly if I’m rushed and I forgot to say so much and then when the call was over I just dissolved into tears terrified that she’ll write and tell the gp to give me less because to quote her “you’re only young (42) and your ovaries are still producing oestrogen so you shouldn’t really need any”
I have bladder problems and fibromyalgia and POTS and LS and other health issues too and I just feel defeated by it.
I said to my husband that I think I’ll just resolve myself to the fact that I’ll be uncomfortable  for the rest of my life and just stop bothering to get treatment cause  it just dosnt work and you just end up getting pooh poohed like you’re making it all up.
Anyway I think I’ll cancel the next app with her and just give up (on treatment lol not life itself although I have been there before too)
Thank you again for your kind words. It make such a difference knowing some people believe me and don’t think I’m overreacting.

I get you.
Really I do.
I'm recently diagnosed autistic too.
I was coping 'masking' all my life, getting by as a normal person with a normal life until perimenopause hit and my anxiety hit me like a train. (Common in high functioning autistic women to suddenly not be able to cope any more in perimenopause apparently)
I can't explain myself verbally get overwhelmed and stressed in medical situations at appointments etc, then I shut down.
So I write it all out before an appointment to hand to the medics in case I get overwhelmed. My husband, bless him, always comes with me to advocate for me too.
It's hard for everyone - but it's extra hard with autism. I too sometimes feel defeated but my autistic strong sense of fairness makes me want to stand up for mysef!  Such conflict! 
Take care Talli,  xx



Sorry Alibeau, didn't mean to sideline your post 

[joziel]

Talli, don't give up. Do you have enough money to go private? Even for a consultation, they can then write to your GP and tell them what to prescribe. The GP doesn't have to listen but most of the time they do.

I am on about 4x the max licensed dose of systemic estrogen because I need a reasonably high level and because I don't absorb well - and there's no way I'd be able to be on that, without my Newson Clinic consultant writing to my GP. I still get the meds free on the NHS. I also know that, if the NHS refused to provide the max dose, I could top up via the private clinic and so wouldn't need to pay for it completely.

[Ayesha]

The only time I got relief from the awful discomfort I was experiencing years ago was when I was on a period, therefore she is talking rubbish, of course you can be dry and suffer the consequence of that.

If you can get an older relative to buy topical oestrogen online, or lie then do so, its the only choice the medical profession have forced you into with their dismissive behaviour. 

[Talli]

Thank you so much Clovie, I feel ‘seen’ 

I was emotionally/physically and se****y abused in my childhood which makes these hard for me and I have real trouble sticking up for myself.
I have two more apps this week, one for my thyroid to tweak my dose because my recent bloods weren’t great and then Pain Clinic for the fibro so for now I’m
Just going to try and forget about it all and see what happens.

Joziel I could go private I just haven’t got the emotional strength at the moment to battle anymore or even talk about it anymore for now to any dr.
My Father passed away two months ago and I’m just exhausted from organising his funeral and dealing with less than helpful family members. Im just feeling burned out so I think I’m just going to take a rain check on it all and forget it.
Hope she hasnt changed my prescription with docs but if she has I’ll go back and try and get them to change it back.

Thank you everyone for your kindness and support. I really needed it today.
This place is a safe haven that I’m so grateful for Xx

[Talli]

Ayesha it’s funny you should say that because thats pretty much the only time I have some relief from the itch and burn is when my period is on.
I’m so done with it all! 

[Talli]

And Alibeau I’m so sorry to have hijacked your post

Your experience has really helped me though, I was fortified for it not going so well when everyone else had said it’ll be great! lol
So I was ready for it not to be so I really appreciate your help and sorry again 

[alibeau]

And Alibeau I’m so sorry to have hijacked your post

Your experience has really helped me though, I was fortified for it not going so well when everyone else had said it’ll be great! lol
So I was ready for it not to be so I really appreciate your help and sorry again 

Talli & Clovie,

Crikey, it's no problem at all, honestly, we're all in this together!

Take good care xx

[alibeau]

I also had VA to begin with and on lower doses of systemic estrogen. I was using Vagifem every day, estriol cream on the outside and YES as well and it was a huge palaver every morning and evening and sometimes in between.

Now I am on decent doses of systemic estrogen (far more than the NHS would ever prescribe via the Newson Clinic) and I don't need to use any local estrogen at all.

My systemic estrogen is probably around 650pmol now, and it takes a lot to get me to that because I don't absorb that well. I'm on 3x Estradot 100mcg patches PLUS 3 pumps of gel. That is nearly 4x the max licensed dose. The level it gets me to, is the same some women would get on 100mcg. It makes zero sense for everyone to be talking about doses. It should be about targeted levels, but no one in the NHS will do that. Sorry but, if you want to get well, you have to go private. It's the same with thyroid as well which unfortunately I also have to go private for and it costs a fortune. At least I get the HRT on the NHS because my GP listens to my Newson consultant's letter and prescriptions.

It is incredible that you have waited 3 years for a menopause clinic referral only to be told to use more YES and come back in 6 months....

Yes, I couldn't agree more! Luckily for me, I don't even remember being referred and was not eagerly awaiting an appointment!